Since It's Multiple Choice, I'll Pick SEID

Those who follow my blog know I was disheartened at the negative reaction to the Institute of Medicine's report suggesting "systemic exertion intolerance disease" be the new label for "ME/CFS." I predicted that insisting on "myalgic encephalomyelitis" will leave us with the status quo, which means the disease will continue to most commonly be known as "chronic fatigue syndrome." My prediction, thus far, has proved true.

I have spoken to others who share my view and actually prefer "SEID." I said, "Shouldn't we also be advocating for what we think is best?" I was told, "Give it up. The ship has sailed. It's over. Move on. Science will solve it."

This greatly disturbs me to the point of tears. We have this opportunity, and we are squandering it. How many more years must we be stuck with harmful disease names? The reason the name wasn't changed in 2003, our last opportunity, was because science would solve it. I assume those who said that expected the scientific answers would come (and thus the name would change automatically) within the next 12 years. But it didn't, and we don't know how long we will have to wait for the science from this point.

Especially now that the IoM committee, which included some of our own experts, has said "myalgic encephalomyelitis" is not an appropriate name, and that the CFSAC could not come up with a majority to make a recommendation in favor of "myalgic encephalomyelitis" (and with very good reason, I might add), I see no hope that the "myalgic encephalomyelitis-only" advocacy will succeed.

Why can't we learn the lessons of the past? If the doctors in main stream don't accept the label, it won't become known and used. Does anyone remember the "CFIDS" advocacy in the '90s? Multiple support groups -- heck, even the largest national nonprofit for our disease -- had it in the name of their organization. Patients insisted on using it. But did it ever go into main stream medicine? No.

So, for patients, we now have a multiple choice:
1. "chronic fatigue syndrome" because it's the name our doctor and public recognizes, but which we hate and misleads people about our disease?
2. "myalgic encephalomyelitis" because it sounds medical, but is hard to pronounce and requires an explanation even to doctors who won't know what to do about it because they never heard of it?
3. "ME/CFS" because it combines the known "CFS" with the unknown "ME," is easier to pronounce, but also requires and explanation which means "chronic fatigue syndrome" must be said in the explanation?
4. "systemic exertion intolerance disease" because it takes little explanation and is medical sounding and some doctors know about it, but is not as well known.

I face this question every time I see a new doctor and have to fill out those forms of what conditions I have. At this point, everyone is making their own choice. Just today, I met someone who said his wife has "CFIDS." We have one who insists on calling it "non-HIV AIDS," in addition to the options above, each of which is used by some.

In this environment, there is no standard except the one I reject: "CFS." Since I reject that standard, then I am left to choose the others based on -- well -- based on whatever I want to base it on.

My choice is "SEID." When I see the blank on the doctors' forms for what other condition I have, I will write in "SEID." Some doctors have heard about it. Recently, my GP had a resident who came in to interview me first. When discussing my situation, she had seen "CFS" in her medical text book, but didn't remember much about it. But she heard a presentation about "SEID" at a center focusing on finding a diagnosis for people with diseases that regular doctors have been unable to diagnose (like the one at the NIH), and it was about the IoM report and SEID.

The IoM notoriety and credibility makes me feel comfortable using the term they recommended when speaking with doctors. News media at the time helped tremendously, even with getting the name known among doctors. Sorry, but it's true. When it comes to what a disease is, doctors listen to other doctors, not to patients. Patients know their experience, not what diseases are (in the mind of doctors). That's why doctors went to medical school, so they would know more than the patients about diseases, so they think they do.

Yes, it does require an explanation, like "ME" and "ME/CFS" does. But the name helps a lot. When the question is asked by acquaintances or doctors, my answer is, "It's systemic exertion intolerance disease. That means the activity I'm doing today causes a system-wide dysfunction making me have severely debilitating sickness symptoms, like I have the flu. So, I have crashes that leave me bedridden for days after doing what healthy people consider normal daily activity."

There it is. They understand 75% of my disease -- the impact it has and why they shouldn't tell me to see a psychiatrist or get more exercise -- in just three sentences. The name fits the description and the description is the best way I know to convey what my disease does to me and has done to my life.

And what's even better. If the doctor thinks he needs to know more, he'll be Googling "systemic exertion intolerance disease" and may come across the IoM report.

I have some patient friends who will think I should instead use "ME," and they have some valid points. But since we're all choosing, I will say "myalgic encephalomyelitis" does not fit my disease. Myalgias is not a major factor in my disease. I fit the criteria for fibromyalgia. But keep your fingers off my tender points, and pain is not impacting me. In fact, it's rare. Headaches and nausea are much more common in my condition. Oh, I feel the overall body aches in the crashes. The sharp pain is extremely rare. But it's the fatigue, the mental fog, the headache, and nausea that impacts me much more. Fatigue is the first and most lingering and most debilitating part of it, not body aches. And since I have fibromyalgia too, it could be debated that my myalgias are from the fibromyalgia.

Additionally, I don't have any proof that I have spinal cord inflammation or brain inflammation. I've not had a spinal tap and not had a brain scan. I don't want the former and have no need of the latter to know what I have or how to treat it. So while there may be evidence to show the disease has both, I can't say for sure I have either. And, it would be logical for a doctor to ask me what evidence I have for encephalomyelitis if I say that's part of my disease. And I'd have to say I don't have any proof of it in my particular case. Credibility lost.

And I refuse to accept the label of "CFS" on my disease. It's wrong, simply wrong.

I hope all understand this is a personal decision of my situation in how I explain my disease to doctors and acquaintances. Since I do work for others in the community, when I speak on their behalf in text or voice, I will use the terms they prefer for their purposes. But in my Facebook posting about my disease, conversations I have with friends, family and acquaintances, and with doctors (including on their forms), my disease is "SEID."

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